Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Lyrica anyone?

Hello my friends...
Just wondering if anyone here has tried Lyrica??
Went to my rheumy yesterday. Rather uneventful. Thinks pain management is where I need to be to get my pain under control. I told him "thank you but i will pass for now" I explained to him that I dont want any stronger meds. I'm allergic to just about all arthritis meds, and the real strong pain meds wont work for me when I have 3 kiddos that I have to keep an alert eye out for. He understood.

He's decided that the shoulder pain is mysofacial pain. Possibly fibro. he said it's common as a 2ndary to chronic diseases. I dont have the typical fibro pains or pain points for that matter. I have had mysofascial pain before years ago after surgery. He thinks thats why the steroids havent worked as well. I agree the spasms are out of control. I agree. So he has put me on Lyrica. He said it will help with the nerve pain. I have so many spasms in my left shoulder and now my left side of my chest. That scared the bajeebus outta me last night. Thought I was having a heart attack!! I had tried to pull some insane weeds out of my garden...loads of them due to all the rain we got the last few weeks. I think I overdid myself. My hands are shaking and I think thats what caused it.

He wanted me to start some electro stimu [spelling?} treatment asap to settle down the muscle spasms. My annual deductible hasnt been met so it would be 700.00 for 6 treatments!! 500.00 with a cash discount. Still outta budget for this little momma buggy! So I started on the Lyrica ...1xday for the first 3 days and increase over the next 2 weeks to 1x morning and 2 at night. Side effect is weight gain and swelling in hands. Greaaaat. He said 1 out of 6. Knowing my luck..i'll be that "1" I asked him if he had other female patients with AS. Nope. Said it's about a 1 to 9 male/female. He didnt say women dont get AS..thank goodness...I'd have had some choice words. I asked him what he thinks of the progression of the disease. He said that with a disease like RA they can flat out say it WILL get worse. With AS it is in waves. Up and down. He said the good thing is that there was no new fusion on last xrays and my bone density this year was actually better .as in normal!! I think that was a last gift from Remicade..

Anyhow..enough ramblings...kids are back in school. Little man is accepting kindergarten. G started high school..sigh! Sofie is loving school...and ARt went out to lunch...it was so quiet. We are STILL in shock from having free time to ourselves!!

Gonna go get an ice pack....any input would be greatly appreciated!
Bug

Angie,

Sorry, but I've got no experience with Lyrica. I was wondering if you've had that MRI yet and if so, what the results were? If you've already posted it, sorry I missed it. You know I've been concerned for you ever since I had my neck problems, but now that I'm back to work and on the mend, I'm worried about you. Please take care of yourself and let me know what you find out.

Take care my friend,
Glenn

Glen..
I am worried...alot. my neck is so stiff. my doc thinks it's mysofascial...possibly fibro. i dont believe him. i sat on it all night and this afternoon thinking and researching. i only had 2-3 of the 18 tender points for fibro. no brain fog, depression, cognitive problems or the others listed as symptoms.

I asked him about a possible pinched nerve. he said i would have numbness or tingling down my arm or leg..which i dont have. i have a stiff neck, pain in my shoulder and rotary cuff area. i have referred pain to the forearm. i have weakness in that arm. it shakes whenever i do any gardening or detailed work at home.

i'm so confused. the lyrica is making me sleepy. too sleepy.

write when u can or maybe call me this weekend if u have time?
your pal bug...hope that neck is doing well!!

LadyBuggie, I am sorry you're having such a tough time. You're obviously a strong and smart person, so I have confidence you will get through this well!! I have no advice to offer, as I've never been on Lyrica, but I wanted to ask about bone density. Is this an issue with AS?? Years ago, when I was 25 or so, I participated in a research study that involved getting my bone density measured. Apparently, it was considerably lower than it should have been for my age. I haven't followed up since then. I suppose I should, huh? What should I do?? Wow, see how I turned your post into a question about myself?!

Thanks,
Moll

Hi there little lady..
Thanks Moll...
I try to be strong. With 3 wee ones in the house I have no choice..but this AS monster really tests me...really tests me!!

I would definitely get your bone density rechecked. Do you have a current rheumy or family doc? You can request one from them. I had mine before starting the remicade. I was told that the Remicade would help with it. Apparently it did in the short time I used it because it was normal this time. Yes, unfortunately osteo is a problem or can be a problem with AS. I dont know the specifics. We've had several posts in the past about it. You might want to do a search in the forums for it.

No problemo turning it into a question..sometimes we see a post and think..."Hey...that reminds me about something that happened to me..what should I do???" I've done that plenty of times here at this great place! Ask away. That's what we are all here for!

Are you currently taking any meds for your AS? Do you take any vitamins? that helps alot! I take my kids one's. Yes...but my family doc said it was fine. I take 2 of the gummy ones. I feel embarrased typing it ..but it helps my hair grow, gives me a more energy and my hair is shiny and just overall good for me in the long run.

Let me know what your doc says...keep me posted!! your pal bug!

Angie,

I will try to give you a call later today or tomorrow if you'll be home. I'm going to Brad's house this afternoon for a while, but if I remember and you'll be there I'll call tonight maybe around 8 or so (my time).
I'm worried about you.

Glenn

Hi Angie, just want to send some gentle hugs.

Hugs

Gerri

Both my mom and sister have used Lyrica. My mom used it to control muscle spasms from MS. It worked good for her but did cause weight gain. My sister used it for depression and it worked for her for a while, but also caused weight gain. I hope it works well for you.

Bug - You are obviously super strong. I think that people who are strong in life usually don't see it in themselves, because they see it as just how life is. But others see it. Give yourself a pat on the back!

And I am so totally going to get myself some gummi vitamins!! That is a great idea! I think there are few things in the world less appetizing that regular old multivitamins. I take fish oil (3000 mg of the EFA/DHA) daily, vitamin D (I just started a couple weeks ago), and NEED to be better about taking my oscal. I do eat a lot of calcium rich foods, though (I love kale - yum). Thank you for your advice. I am going to ask my rheumy about this when I see him again. He's got me on monthly appointments now, which is great. Also, I am up to one sulfasalazine a day now (no sign of allergy at this point, so I am hopeful).

Take care!!
~Moll

hi buggy,

hope the lyrica gives you some relief.

i've had myofacial pain in my upper left back since 1998 due to "pulling" either tendon(s) or muscle(s)....did this quick movement, shock up and down that side of my body....and then lots of muscle spasms (didn't know that at the time).....then lots of trigger points activated.....a band of trigger point material....weakening muscles including the neck......occipital nerve pain....numbness in face....a real mess....and doctors and PTs miraculously got it under control.......lots of ultrasound at the PTs (now i get occassional ultrasound at the chiros).....then lots of trigger point injections (they were the major miracle).....and started on zanaflex (7 years ago) which i take every night before bed and in the day when needed....the muscle relaxant is what i believe keeps it under control....unless i overuse those upper back muscles, then i do lots of ice and heat (both work well for my muscle spasms) and go in for ultrasound, and sometimes go in for a few trigger point injections.

it is probably something i will have to control for the rest of my life....that includes very selective sitting....but i really can't believe how those doctors (mostly physiatrists) and PTs have turned my life around......for the first few years, it was daily constant pain, and now, its usually only a minor annoyance. the only time its a real problem is when it gets bad enough that the pressure of the bed irritates it, then i sleep with a gel ice pack under it, and that helps.

when it was really bad, i had the referred pain up into my neck, head, face and down into my arm and hand, but i tried to control those pains by dealing mostly with my upper back.....getting to the root of the problem.

it is local myofacial pain....

hope you get yours under control,
don't know if any of these things might work for you,
that's why i described them.

sue